Category Archives: The challenges of SCI

Recent conversation outside my local coffee shop. I’m sitting and chatting with my friend when a woman in her mid 40s, slightly disheveled but generally pretty normal looking, walks out of the café, stops in her tracks about ten feet away and addresses me:

Woman: Are you really in a wheelchair? Do you actually need it?

Me: Excuse me?

W: I’m just wondering if you’re actually paralyzed and if you need the chair or if you’re just using it, because…well…you know.

M: Um…do you really think I’d be in this damn wheelchair if I didn’t need to?

W: Well it’s just that you’re sitting with your legs sprawled open and you don’t look like you need to use that chair, so I’m wondering if you’re actually paralyzed.

M: Do you make it a habit of asking strangers such personal questions about their conditions?

W: Well, I know people who are actually paralyzed are usually very open about talking about these things and you just don’t look like you actually need a wheelchair. So, are you or not?

M: This conversation is over.

W: Well! I guess that answers that then, doesn’t it?!

M: You need to leave now lady.

She storms off, leaving me to wonder why she’s the one who’s agitated and exasperated.

***

In the time since my spinal cord injury, I have rarely, if ever, had any negative or insulting interactions with strangers in public. Initially, the fear of such an interaction terrified me. I was fearful of going anywhere in public, I was anxious about the looks I would get, the expressions of curiosity and bewilderment I would inevitably see on people’s revealing faces as they walked by me in the street, towering two feet above me.

But time and time again, I’ve been proven wrong. Ninety-eight percent of the time, I’m treated with civility, genuine greetings, and offers to hold the door open or move a chair out of the way to let me through. Of course, every single concession or accommodation that people make for me adds to my immense frustration at not yet being able to move freely on my feet, at eye level, where I want to be. Frustration aside, other than some confused, staring children who often don’t seem to know what to make of a guy in a wheelchair, I’ve become accustomed to cordiality and respect in public.

For that reason, I suppose I was due for a strange and unsettling interaction like this one.

I still hate everything about the wheelchair with the same passion and vitriol that I’ve had since day one. So naturally, I really dislike anyone noticing it or pointing something out about it. I continue to pray and hope for the day when it is a thing of the past and I won’t have to have this unwelcome companion with me at all times. That said, I’m not clueless, I realize that a society full of people who are upright and then a person who’s sitting down, rolling by is going to be noticed, but maybe because of the general progressiveness and open minded mentality of the people where I live, I don’t often have to worry about feeling too noticed for standing out, but of course this time it was different.

If the inappropriate and nosy questioning didn’t prove the nuttiness of this strange and sad woman, then my ensuing conversation with the cafe worker did. He came out, apologized for her behavior and said that she had ruffled some feathers with him as well when she purchased a pastry, ate some of it, complained about its price yet refused a refund, then continued to eat almost the entire pastry before returning to the counter and demanding a refund, which she was politely given. The point was proven: this person didn’t know how to interact with society and in the span of two minutes had angered a handful of people.

As she walked away, my friend (who has been a tremendous source of support and encouragement for me since my injury), instantly knew that I was on the verge of getting upset and deftly changed the course of my emotions. He told me that as crazy and weird as she had been, she was 100% right about one thing: I don’t look like I belong in a wheelchair. He said that he’s been noticing it for quite some time, that my overall health, confidence and increased strength make me look less and less like the vulnerable and weak person that I was not too long ago, and more and more like someone who’s about to jump out of the chair and start running down the street. He pointed out that I was sitting so unusually in the chair, scooted forward on the cushion with my feet on the ground and my legs comfortably spread apart, and the lady just didn’t know what to make of it.

I’m grateful for my friend for helping me take an awkward and potentially frustrating public interaction and treat it as a positive occurrence. In fact, within seconds of Mrs. Nuttipants’ departure, likely to annoy another self-respecting citizen or two, I had forgotten about the entire thing. I realize that had this conversation happened a year ago, I might have had a very different reaction but this time, I got the last laugh.

We all have sacred places, locations that have a strong link to our emotions and memories, that register some kind of greater meaning within us. One of my most sacred and favorite places in the world is the high desert plateaus and canyons of southern Utah and northern Arizona.

I first came to this region in 2005 when I was working as a trip leader for guests on biking and hiking tours and taking delight in seeing their faces when they experienced this truly special place, unlike any other in the world. It was always the same story, everyone signed up for the trip mostly because of the draw of the Grand Canyon. The other areas we would visit were usually more of an afterthought, an asterisk next to the statement of having seen one of the natural wonders of the world, or as us trip leaders would jokingly refer to it, “the biggest ditch in the world.”

The result was always the same. People usually hadn’t heard much about Bryce Canyon or Zion National Park (not to mention Red Canyon, the Kaibab plateau, Cedar Breaks and some of the other places we passed through), but once they saw all of it, they almost always admitted that the Grand Canyon was just a part of a truly spectacular area, and the other national parks would often cement their presence in their memories stronger than the big ditch.

I spent a good part of three summers in this area, visiting these parks over and over again yet I never got bored of the dramatic cliffs, canyons and geological formations. So it was only natural that when I found out that my fiancé had never been to any of these places, we decided to make a road trip out there. In order to make the long drive a little less painful, and to continue to explore our own state of California, we decided to throw in Death Valley National Park too, for good measure.

I wasn’t sure how I would react to visiting these places again after an eight year hiatus, and more importantly, now in a very different physical situation, where I wouldn’t be able to do the hikes I had done so many times or share my favorite peaks and viewpoints with Brita. What would it be like to visit my sacred place but without the physical ability to experience it as I remember? Was I setting myself up for disaster?

The answer, probably not surprisingly, was mixed. On the one hand, it was extremely difficult to be in beautiful and memorable locations yet constantly feel limited by where I couldn’t go, what I couldn’t see or relive again. On the other hand, I was able to share these places with Brita, to experience seeing them through her eyes and taking joy from that process. Not to mention that simply being in these places, with or without hiking and climbing up to the tops of the mountains, was soothing for my soul. At the end of the day, seeing the late afternoon sun shine on the massive, red, sandstone cliffs of Zion confirmed to me that I had made the right decision to come back.

For the last couple of months, I’ve been practicing standing up by myself, unassisted, in a walker and while it’s certainly not as effortless, long-lasting or smooth as I’d like it to be, it’s a measurable improvement from before. It was only natural then that throughout our road trip we would pull the walker out of the car, and I would rise to my feet and at least get a slightly higher view than from the wheelchair. While it wasn’t a replacement for the inability to go on a hike, and while I still long to climb back up to those peaks and descend into those canyons, it at least made it a tiny bit less painful and a whole lot more memorable. This sacred place remains sacred to me, and nothing that has happened to me physically can take that away from me.

These were the words, expressed in his slow, charming Alabama drawl, of one of my trainers a while back during a rather challenging exercise. He was a corky guy, eccentric yet affable, and I probably only worked with him a handful of times, but he had an eclectic knowledge of the body and liked to share his experience which was largely based on his years as a professional body builder.

He said that when it comes to many repetitive exercises, most people think only about completing the desired number of repetitions. Instead of that approach, he suggested that it’s not important whether you’re doing six, ten, or twenty repetitions but that you shift the focus from the completion of the entire set to an intense concentration on each repetition as its own end goal.

Clearly, the idea of “making each repetition count” wasn’t a new one at all, but the way he expressed it, his suggestion to think of each as an “event,” resonated with me.

The reason I’m thinking, and writing, about this now is that I’ve reached a point now in my rehabilitation where this advice is especially useful. In the last couple of months, much of what I’m working on has been extremely specific, focused and calculated exercises targeting small muscles and newly established and still weak neurological connections. These aren’t movements I can just complete unconsciously or with minimal attention. Now, I have to concentrate more than ever to turn on certain muscles, turn off other muscles that want to take over and dominate the movement and give every ounce of mental energy I have to try to strengthen a dormant or underutilized neurological connection.

After all this time, it’s still really hard for me to describe what it feels like to deal with a damaged neurological system.

It’s not like anything I ever experienced before my accident. It’s nothing like being on a long run or bike ride and battling complete exhaustion to fight through to the end. It’s not like being in a weight room and challenging a previous feat by adding a heavier weight, gritting your teeth and muscling through the movement. Nor is it like getting into a challenging yoga pose and trying to contort your body into a pretzel-shaped position.

I have to concentrate so much more on each specific aspect of my movement because I’m not only engaging the muscles that I do have control of, but I’m trying to reestablish those damaged connections. That’s why treating each repetition as a separate event is such great advice. It slows the entire process down, demands tremendous brainpower and forces me to prepare, complete and analyze each repetition with focus and determination. I also like that it can be applied to any repetitive movement or practice, not just physical exercise and it allows me not to take any practice for granted. Slowing down and treating each repetition as its own event can only benefit my continued recovery.

On a recent warm and sunny Indian Summer day, I was sitting outside when I noticed a dripping on my shoulder. There was no way it was coming from the cloudless sky above so it quickly became apparent that the sweat was dripping off my head, naturally moisturizing my neck and shoulder.

One of the many, and I mean MANY, secondary complications of a Spinal Cord Injury (SCI) is the deficiency in body temperature regulation. Simply put, the nerves in the spinal cord that control perspiration to various parts of the body are damaged thus leading to a decrease or inability to perspire. Similarly, when a person with a SCI gets too cold, it may be very time consuming and challenging for them to warm back up. The comfortable range of temperature for someone with a SCI is a lot more limited than it used to be. As you could imagine, this can lead to many challenging situations and unanticipated planning.

In the 18 months since I wrote that last post, my ability to handle more extreme weather has dramatically improved. I remember my feet used to turn to ice blocks at night, even in warm settings, because of the lack of circulation. Sitting in the sun for more than a few minutes was just asking for hours of suffering, as my bone dry skin wouldn’t naturally cool down the rest of my body.

I can’t say that I’m anywhere near where I’d like to be but the sweating and the temperature regulation as a whole has improved dramatically. Strangely enough (or not so strange if you know a bit about the left-right imbalance that comes with SCI, stroke, and other neurological injuries), I sweat much more out of the right side of my body than my left. I no longer have to rely on a physically intense workout to get a decent sweat. If the weather is warm enough, the moisture will come out.

I have to credit swimming as one of the contributing factors to this. Getting in a pool a couple times a week and literally forcing my body to deal with a dramatic change in external temperature, only to transition again after getting out and showering, has made me more adept at regulating my body temperature. I haven’t yet been anywhere too cold so I don’t know if I feel as confident with that, but I’m sure I’ll discover that soon.

So the next time you sweat, don’t take it for granted. That extra layer of perspiration and body odor is what’s keeping your body functioning at its peak.

“So what do I need for backpacking this weekend? It’s going to be a shorter trip but I still need food, clothes, and supplies for three full days and nights… And next Saturday I’m going on a river float all day with friends, should be so much fun! Oh and I have to remember to borrow my roommate’s water filter for the next camping trip coming up in a couple weeks. Don’t want to be stuck in the mountains without sipping the good stuff from the streams and rivers!”

These were the typical thoughts running through my head during the summer time a couple years ago. Having spent the previous numerous summers working in the travel industry and with little free time, I had come to appreciate having the freedom to explore the many outdoors opportunities that were at my footsteps in Northern California. Yosemite, Lake Tahoe, the giant Sequoia trees, Big Sur, the coastal redwoods, and many of the gorgeous peaks of the Sierra mountains were all less than a half day’s drive from my urban life in the middle of San Francisco. I had the unique opportunity to live in a dynamic and fast-moving city and yet have access to some of the most beautiful natural scenery around; a truly fortunate situation to be in and one for which I was continuous grateful.

Fast forward to now and some things haven’t changed. My friends are still going on those backpacking trips, they’re still hard at work seeking undiscovered lakes or less traveled trails to explore and planning fun adventures. The river floats are still happening as are the epic day long bike rides that customarily include a pastry and coffee jolt or a cold beer conclusion. The roaring campfires (and the stories and laughter that come with them) are still burning strong, and the miles and miles of the fun-filled drives crisscrossing the varied topography of the California that I love so dearly are still being driven, albeit in slightly nicer cars reflecting the improved career trajectories of my thirty-something social community.

The major difference, of course, is that I’m not there.

It’s like watching a movie you’ve seen a hundred times but with one of the major actors missing. It doesn’t feel right.

To say that I’m envious of my friends’ adventures is the understatement of the century. I would give anything to be tromping through the mountains with a backpack on my shoulders, laughing and chatting and admiring the grandeur of mother nature’s best offerings. And honestly, the one thing that may be harder than not being on those adventures, is hearing about them first-hand and masking my frustration and resentment with my attempts to conjure sincere excitement.

So what’s keeping me sane this summer? Pretty simple actually. My desire to reach my shorter-term goals of recovery, some of which are looming closer on the horizon, fuel me just as much as a summer adventure would. I know that the sense of accomplishment I would receive from standing up on my own or taking a few unassisted steps in a walker would fulfill me more than these adventures did in the past. I’ve worked so hard for so long that seeing the fruits of my labor would give me immense satisfaction. While my current summer adventure is a bit more lonely, and a lot less scenic than my former escapades, the rewards are, to say the least, tantalizing, validating and worthwhile.

Yesterday, July 8th, marked two years since my Spinal Cord Injury, since everything that I knew about the world, about myself, about my body, and my life was turned upside down in an instant and launched me on this whirlwind of a journey that is recovery.

I wasn’t entirely sure if I was going to post about this strange date as its relevance is quite insignificant to me now. I remember last year, as my one year anniversary approached, I was stressed out and anxious (read my posting here if you’d like). Because the traditional thinking in our medical system says that most or all of recovery from SCI will occur in the first year or, if you’re lucky, in two, it was disheartening to think about the magnitude of that date and all that it implied. Oh how so much has changed…

Shortly after that day, I stopped counting the months since my accident. The eighth of the month, which had always been so present in my day-to-day consciousness especially as the calendar changed and a new month would arrive, became irrelevant. For the last many months, I actually completely forgot about the eighth of the month as I realized how unimportant it was. I told myself from the beginning that I was going to engage on the path to full recovery and that I would give everything I had to achieve my goals. Therefore, why should an antiquated way of thinking – an outdated medical approach that has been proven wrong repeatedly by those around me, one that quells and limits the spirit of recovery instead of encouraging it to flourish – why should that define my recovery? It shouldn’t, and it won’t.

I fully believe, as I have since the day I was injured, that with perseverance, diligence, unwavering commitment and by keeping my dream alive within me, that I can and will get back on my feet, no matter how long it takes. Also, I can’t overlook that an exceptional amount of my healing and breakthroughs have occurred only in the last few months! Maybe my spinal cord and my body did need a longer period of time to process and accept that initial trauma, but what started as the weakest me that me has ever known, has transformed into a period of continuous recovery and accomplishments.

Although it has been two very hard years, more trying, devastating, arduous, and insurmountably difficult than most anyone can imagine, I have learned tremendously during this time. I have challenged myself to an extreme I could never imagine and I have witnessed how much love surrounds me on this fight of mine. For that, I’m grateful. For the opportunity to continue on the path to realize my dream of walking and running again, I am hopeful and I continue to fight.

So thank you two year anniversary, thank you meaningless calendar date, thank you for reminding me that the human potential is not defined by 12 month cycles or doctors’ prognoses. If the spirit to heal is present, then the healing will persist. And further forward I push, looking forward to the next breakthrough and the next stage of recovery.

Let my absence from my blog end! I’ll explain later why I haven’t kept up for a while but for now, it’s time for another update.

I’ve recently come to the conclusion that to continue my effective recovery from Spinal Cord Injury (SCI), I have to remain isolated on my own little island.

I’ve probably mentioned in the past that recovery from SCI is all over the place, to say the least. Depending on a variety of factors (many of which are not well understood, no matter what the medical community says) one’s ability to regain function, get stronger and recover is largely unpredictable. I’ve also explained how one’s initial functional capabilities following the injury is largely dependent on where the injury occurred on the spinal cord (higher up towards your neck and head or lower down towards your tailbone). But here’s where the ambiguity of this injury (and its recovery) becomes prominent.

People who are injured in the same exact location on their spinal cord can have drastically different capabilities and recoveries. For example, I’ve met a few dozen other people who broke the exact same vertebra in their neck as I did, C5 and C6 in the lower neck. Each and every one of these people’s situations is different, as is their respective recovery.

Unlike more common and less severe injuries (i.e. a torn ACL, broken bone, strained muscle), there is no standard protocol for how to pursue recovery following a SCI, even for each specific level of injury. Some are left with little function in their hands while others have an iron grip; some with zero core control, others with boxer’s abs; some can wiggle a toe or lift up a leg and some can’t even feel where their lower body is in space (proprioception). As a result, the timetable for recovery is all over the place.

I bring this all up now because the desire to compare one’s injury to others’ progress and recovery is, I think, inevitable and only natural. I hear of another person with a C5/C6 injury who was able to move something or regain function at a certain time after their injury and I immediately start to compare to myself.

“Can I do that yet? What does it mean if I can or can’t?”

“I wasn’t able to do this certain thing that someone else did at a specific point after the injury, so am I doomed?”

“Well, if I wasn’t able to do this function at this time then I may never be able to.”

“If this one specific aspect of recovery was going to happen (like it did for someone else) then it should have happened by now.”

These are the thoughts that run through my head when I talk to anyone else with a SCI. While it’s inspiring and motivating to hear that someone was able to perform a specific task or function, it also messes with my head and threatens to endanger my confidence and resolve. That’s why I believe that comparing one’s SCI to someone else, no matter how similar they may seem, is a zero sum game.

I don’t want to stop these conversations with others about their recoveries, so what I’ve had to do is place myself on my own little island of recovery, and force myself to remain there, all by myself. It’s difficult because I want solidarity with others. I want to hear someone tell me that it’s going to happen to me because it happened to them. I want to think that my recovery is linked to others, that I can use their timetables to structure my own and manage my expectations, but that’s just not the way it’s going to be.

This recovery is a solitary one. Comparing doesn’t get me anywhere, which is why I’ll stay on my own little island, and keep working towards my goal.

***

I’ve been away from the blog for a bit because I’ve had my hands full following up on my survey and garnering momentum for a petition I started to change the way SCI is approached and dealt with. My goal is to get the word out, get as many signatures as possible to my petition so that I can get it out to multiple forms of media. If you’re interested in signing my petition, check it out below. If you have any connections to media (journalists, websites, news sources….anything at all) and you want to share them with me, I’m grateful in advance.